Re: Shands?/wanting a DX

[Guest guest]

Marsha, in the first couple of years of having symptoms and no dx, I

nearly went mad. I couldnt stand it. Then later I calmed down but was

always worried that I possibly had ALS or that what I had was

treatable and maybe doctors were wasting my years by not dxing me and

so I still wanted a name badly. I also didnt know what to tell people

who asked about my health and so because like you, in the beginning it

was thought to be possible MS, I would say MS or just a neurological

disorder. After 9 years of doing the rounds with neurologists I still

dont have a definite dx but I know that I dont have ALS but I do have

a definite upper motor neurone disorder which is either HSP or PLS. I

still tell people that I have either MS or a neurological disorder

which satisfies them but after watching a documentary the other night

about a 37 year old woman who has MS and is now in a nursing home (I

didnt know that MS could be so debilitating! Just like PLS there are

different varieties) I wont be mentioning MS anymore. Just simply

that I have a neurological disorder.(but still say MS when speaking on

the phone to people who dont know me) Thats all people need to know.

I know its very hard not having a dx Marsha and like you I am still

waiting but my present neuro is just about there and yours will get

there eventually too. I think if I had been diagnosed with PLS in the

early stages or even worse ALS like some on here have been, and then

got their dx downgraded, I know I wouldnt have coped with it. I

believe my stability is due to the fact that I have no dx and thank

God that every neuro I have seen has never given me any cause to

worry. In fact, they have given me hope. As the old saying goes " its

horses for courses " and " no new is good news "

Aussie Maureen

>

> For me I need a name dx as i do better knowing what i am dealing

with, verus

> this who knows. I tend to question myself, doubt myself when i can't

put a

> name to something. then trying to explain to others without a

specific dx is

> so difficult. since i was initially told most likely MS i have been

using

> that when ppl ask. Now not sure what to say. i know i don't have

to say

> anything. but i would prefer to be able to tell friends and family

something

> concrete which in turn helps them sorta undersstand rather than

having to

> justify why i can't do this , or why i have to do this this way now

etc....

>

>

[Guest guest]

Thanks Maureen

Ya Know I do ok when I am not having doc appts as much, cause when I go see

the doc I hope for answers. between i tend not to obsess over that.

so by going last week, hearing MS def ruled out, him wanting to send me to

another neuro just brought on that anxiety and obsessing again of wanting

answers.

i do find it interesting though whether its MS or HSP i am still getting the

same treatment for symptoms. I will being referred to another neuro but who

knows when that will happen.

until then, i think I will be ok with keeping on, with assumption its HSP.

as long as continue receiving treatment for symptoms.

of course i want answers, i want to know if there is something to do that

would stop whatever, cure it, etc....

I know though whatever isnt killing me, i am still able to work, and other

activities although i make adjustments to do so. its better to make those

adjustments though than not being able to do those things.

time will tell, maybe

gentle hugs

Be Blessed

Re: Shands?/wanting a DX

> Marsha, in the first couple of years of having symptoms and no dx, I

> nearly went mad. I couldnt stand it. Then later I calmed down but was

> always worried that I possibly had ALS or that what I had was

> treatable and maybe doctors were wasting my years by not dxing me and

> so I still wanted a name badly. I also didnt know what to tell people

> who asked about my health and so because like you, in the beginning it

> was thought to be possible MS, I would say MS or just a neurological

> disorder. After 9 years of doing the rounds with neurologists I still

> dont have a definite dx but I know that I dont have ALS but I do have

> a definite upper motor neurone disorder which is either HSP or PLS. I

> still tell people that I have either MS or a neurological disorder

> which satisfies them but after watching a documentary the other night

> about a 37 year old woman who has MS and is now in a nursing home (I

> didnt know that MS could be so debilitating! Just like PLS there are

> different varieties) I wont be mentioning MS anymore. Just simply

> that I have a neurological disorder.(but still say MS when speaking on

> the phone to people who dont know me) Thats all people need to know.

>

> I know its very hard not having a dx Marsha and like you I am still

> waiting but my present neuro is just about there and yours will get

> there eventually too. I think if I had been diagnosed with PLS in the

> early stages or even worse ALS like some on here have been, and then

> got their dx downgraded, I know I wouldnt have coped with it. I

> believe my stability is due to the fact that I have no dx and thank

> God that every neuro I have seen has never given me any cause to

> worry. In fact, they have given me hope. As the old saying goes " its

> horses for courses " and " no new is good news "

>

> Aussie Maureen

>>

>> For me I need a name dx as i do better knowing what i am dealing

> with, verus

>> this who knows. I tend to question myself, doubt myself when i can't

> put a

>> name to something. then trying to explain to others without a

> specific dx is

>> so difficult. since i was initially told most likely MS i have been

> using

>> that when ppl ask. Now not sure what to say. i know i don't have

> to say

>> anything. but i would prefer to be able to tell friends and family

> something

>> concrete which in turn helps them sorta undersstand rather than

> having to

>> justify why i can't do this , or why i have to do this this way now

> etc....

>>

>>

>

>

>

>

>

>

>